Disability, Prenatal Testing and the Case for a Moral, Compassionate Abortion

Note: If the headline didn’t already clue you in, this is controversial subject matter. If you come away from this article thinking that I advocate genocide of a disabled population or the coercion of women pregnant with disabled fetuses into abortion, that I hate disabled people or think that Down syndrome people don’t deserve to live, you have failed to understand my point. Please walk away from the computer, breathe deeply, and start again from the beginning.

I believe that it is possible and desirable to respect disabled people while still working to eliminate genetic disorders so that children who might have had Down syndrome or cystic fibrosis (or any other disease) have a chance to be born without them. I believe that abortion of a disabled fetus can be a compassionate choice made for morally sound reasons, and does not at all conflict with the respect due to disabled people. I am firmly pro-choice, and I believe strongly that the wellbeing of all born persons in a family is paramount before considering the needs of a fetus. My position is that fetuses are incapable of being self-aware and therefore cannot experience suffering the way born persons do. The prevention of suffering is central to my moral beliefs.

If you’re already angry, please stop reading and go get yourself a nice cappuccino. Have a beautiful day. And then, if you still really want to read this, take frequent breaks to punch a pillow with a “hello, my name is Sierra” badge stuck to it.

Apparently, science can do something awesome: tell you the genome of your fetus within the second trimester:

Using a blood sample from the mother and saliva from the father, scientists at the University of Washington mapped out the entire genome of a child while he was in the womb. The discovery, which was published June 6 in Science Translational Medicine, makes it possible to spot disorders from sickle cell disease to cystic fibrosis to Down syndrome in the second trimester of pregnancy.

Best of all, at least for those of us who shiver at the thought of an amniocentesis, is that it’s noninvasive.

About 10 percent of the free-floating in a mother’s blood belongs to her baby, and by comparing her blood with her own and the father’s DNA, scientists can pinpoint which DNA belongs to the baby. From there, they can sequence the child’s entire DNA code. Or at least, they can get pretty close. Their accuracy rate was about 98 percent in the infant boy they tested.

Zylstra says that, “at first blush,” this information looks “incredible.” Yes, it does. Because it is. This kind of technology gives us more control over our own reproduction, which means that we’re better able to make ethical decisions about our parenting. As Zylstra points out, parents who are expecting a special needs child can prepare in advance for what that means.

But there’s a catch, says Zylstra:

You can be emotionally prepared for his birth. You could choose a C-section if that was warranted, or line up services for him, or join a support group.Or abort him.That’s the rub, said Gene Rudd, president of the Christian Medical and Dental Associations.

It’s hard to imagine this test wouldn’t be the instigation of selective abortions, since many women with prenatal diagnoses of Down syndrome currently abort, he said. “It’s search and destroy that we do that now with Downs,” he said. “And to what benefit do we do that? If we look at the statistics or surveys that come from families that have raised a Downs individual, 97 percent said it was rewarding.”

It’s a life worth living, and many see that, says Amy Julia Becker, who has written extensively about her daughter with Down syndrome. Heart conditions and respiratory troubles often suffered by those with Down syndrome can be treated, life expectancy has risen from 25 to 60, and by all accounts, raising a son or daughter with Down syndrome can be a wonderful gift. The numbers are tricky, but Becker says that about 70 percent of babies prenatally diagnosed with Down syndrome are aborted.

“Ultimately, the problem is that we have a society that says it’s okay to kill unborn babies,” Rudd told me. “If that weren’t permissible, this information wouldn’t be misused.” Prenatal testing in a country with legal abortion lets parents decide if that child is “good enough” to live, he said. But as imperfect, capricious, sinful beings, how do we figure we’re smart enough, or good enough, to judge anybody else’s shot at life?

“Who are we to say that cystic fibrosis is such an overwhelmingly terrible disease that they shouldn’t be allowed to live?” Rudd said. “Do we say that about a one-year-old who is diagnosed? What’s different about a younger child?”

There are a lot of pieces to this pie, so I’m going to address them problem-by-problem. Ready? Here we go. This article:

Fetishizes disability.

Dehumanizes children.

Downplays economic concerns and long-term viability.

Minimizes the suffering of children and caregivers.

Is logically inconsistent.

Conflates fetuses with born children, and therefore

Devalues labor, delivery and motherhood.

Before we go any farther, here is my main point:

Having an abortion to prevent a child from being born with Down syndrome or another disability can be a positive moral choice. Okay, now let’s go on (assuming you’re not already plotting my demise).

1. Fetishizing disability

The disability rights movement is hugely important and I support it. It’s especially vital for individuals with mental illnesses, who are often judged as “not really disabled” because there’s nothing visibly wrong with them. Disabled people have a long history of being medically abused, used as test subjects without consent, being abandoned or forced to live in squalor, and being generally reviled, disrespected and treated like freaks. We need a movement to rectify that and prevent it from ever happening again. I’m glad we have one.

Now. Here’s where I depart from Zylstra and other activists.

Respecting the rights of disabled people does not mean honoring or celebrating disability itself. Apart from the perspective and political activism that many disabled people have found via their experiences as a discriminated-against class, I’d wager most people who are disabled would rather not be. Just like poor people value their wisdom but would really rather not be poor. I’ve been a poor kid. I’m still pretty poor. I’ve learned a hell of a lot about empathy from being poor. But would I choose to be poor? No. Would I want others to be poor kids? No. Would I jump at the chance to end poverty once and for all? Yes! I want people to listen to what I’ve learned, but I don’t want them all to have to learn it the hard way, like I did. I would wager that at least some disabled people feel the same.

When you argue that children with Down syndrome are “special gifts” or that raising them is a “rewarding experience” for parents, you are appropriating their difficulties and fetishizing their difference. That is the opposite of respecting a disabled person. I get that who we are is shaped by experience and that many disabled people consider disability to be integral to their personalities – just as I see poverty as a formative experience for me – but I doubt they would have chosen to be disabled in the first place. Would they have voluntarily given up able bodies for the wisdom earned from being disabled? Would they refuse treatment, if it were available? Would they choose to suffer disabilities just so that their parents could have the “reward” and “special gift” of raising them?

I hate the thought that there will be fewer people with Down syndrome in the world as a result of advances in prenatal testing. As I’ve written before, it impoverishes us all when we selectively abort babies based upon particular characteristics (gender, for instance, in China and India… disabilities here in America).

I understand this argument. I do. I get how parents of Downs children learn from their experiences and love their children fiercely and imagine how empty and cold the world would be without children like theirs. But this line of reasoning makes me profoundly uncomfortable. By all means, love your child! By all means, share your hard-earned wisdom! But to wish for Down syndrome to never go away? to never be cured? Why would you wish that?

I can’t help but think that it’s not about the children’s quality of life (wouldn’t you choose a life for your child that didn’t include Downs, if you could?) but about the parents’ inability to distinguish between their love for their kids and the condition from which their kids suffer. By all means, celebrate your child and his or her wonderful uniqueness! (I say this without irony.) But don’t reduce your child to the mere fact of having Downs, as though having Downs makes them a kind of endangered species and that Down syndrome must continueforever because kids like yours would never exist again without it. Your child would be special, you would have that bond, with or without Downs.

Wanting to eradicate a condition that causes suffering or dependence in a population is not the same as wanting that population to die. Imagine for a moment that we’re not talking about abortion. If it were possible to “cure” Down syndrome prenatally, preserving the same fetus, would you deny your child the treatment because you’d hate to see fewer Down syndrome children in the world?

Which brings me to #2.

2. Dehumanizing children

Focusing on the “rewards” to parents of raising a special needs child means privileging parents’ personal growth over the best interests of their potential child. If parents choose to bring into this world a child that cannot be reasonably expected to care for himself as an adult, they are gambling with their child’s future. Who will care for him or her when the parents are gone? Do they have the resources to provide for their child’s medical needs? Do they have other children who would be neglected because of their parents’ intense focus on caring for the special needs child?

Now, I understand that many, many Downs people are able to function in the world without immediate care, but others can’t. I think it’s awfully brazen and selfish not to consider one’s potential child’s quality of life for the entire duration of that child’s life before deciding what to do. I think it’s necessary to ask tough questions of yourself, to honestly answer the question of whether or not you can provide that child with everything he or she will need for life.

Special needs children aren’t high-maintenance pets that exist to teach you lessons about fortitude and compassion. They are people. And it’s because a special needs fetus will become a person at birth that abortion should be on the table. Responsible, moral reproductive choices involve doing the hard math and yes, making decisions to either give your child the best possible long, independent life or to terminate the pregnancy early if you know you can’t.

Clinging to a soundbyte belief system that makes your decisions for you (“Abortion is murder!”) or abdicating responsibility (“God will provide as long as I don’t get an abortion!”) means shirking your fundamental duty as a parent: to make decisions with your child’s best interests at heart until your child can do so herself. That responsibility may lead you to give birth to and raise a disabled child – and more power to you! – as long as you’re doing it with your eyes open and taking every possible precaution to make sure you can deliver on the promise of care you are making your newborn child. But it may also mean having an abortion.

It intrigues me that religious people, the ones who are the first to point out the flaws and fallen nature of the world, are the last to acknowledge the result: that horrible things happen, and those situations require hard decisions. Birth defects and excruciating diseases happen. To refuse to act to minimize suffering (indeed, to prevent it) is at best selfish and at worst abusive. To pretend that there is always a perfect answer to a problem in this imperfect world is to effectively close your eyes and live in your own imagination.

3. Classism

Not every family can afford the medical care of a special needs child. Not every family can afford the time spent caring for a special needs child, especially if they already have multiple children. To demand that families that know they lack these resources nonetheless give up everything to bring a child into a world where it will be neglected, inadequately treated by doctors, and in all likelihood end up in foster care or, as an adult, homeless, is cruelly insane. To focus on mere “life” to the exclusion of the quality thereof is not just stupid, it’s evil. It is deliberately inflicting suffering on others to soothe your own conscience.

(Though, given that the estimate was made in the context of a lawsuit, it’s probably a little on the high side.)

4. Minimizing the Needs of Others

Parents and caregivers are people, too. They do not forfeit their own needs when they have children; indeed, doing so is actually harmful to children. Recall the many times I’ve said that having a stay-at-home mother made me feel hopeless and guilty about becoming a woman. I was put in the impossible position of either following in her footsteps, thereby ensuring that every female in our line would do nothing but sacrifice for her children and never get to have her own dreams, or not following in her footsteps and feeling guilty that I was (a) rejecting her by rejecting her lifestyle and (b) doing my own potential children some kind of injustice, even though I didn’t want my children facing the quandary I was! I wished my mother had more of a life outside of raising me, because then I would be freer to have a life, too.

If parents choose to welcome a special needs child into their family, they must consider how it will affect not only that child, but also themselves and their other children. They must make room for breaks and self-care to preserve their own health, mental and physical. In my own church, there was a woman with two children who got pregnant and found out her child had a fatal defect. She decided against having an abortion, believing that God would honor her and heal her child (or at least provide for it). The child lived 13 years in unspeakable pain, without cognition, undergoing surgery after surgery until she died – and by this time the family had exhausted its resources, the other two children had been practically abandoned. The mother had worked herself to the bone, endured a failed promise from God, and had to mourn the child all over again at the end of it all. That child was not a “blessing.” It was not a “rewarding” experience – though the mother might tell you so out of sheer love and the need to justify her situation. The child’s birth destroyed her family, and she was never even aware enough of her own existence to realize she was loved. How is that the hand of God?

5. Logical Inconsistency

First, we get the argument that raising a special needs child is a blessing:

[Says Rudd:] “If we look at the statistics or surveys that come from families that have raised a Downs individual, 97 percent said it was rewarding.”

That is abhorrent abuse of statistics. First, your entire sample (people who have chosen not to abort) is already biased toward the belief that what they’re doing is rewarding. Where are the surveys for women who chose to abort Downs fetuses? You’re comparing this 97 percent to an empty page. They might say that their abortion was a blessing, but you can’t print that, can you? Not on a Christian blog.

Second, the parenting discourse in Western culture is so punitive that parents of “typical” children aren’t even free to express that they dislike the drudgery of parenting without being accused of being sociopaths and hating their kids. That’s why such statements as “I hate being a mom” show up anonymously on Secret Confessions and have been called the Greatest American Taboo. How much more pressure is there on parents of special needs kids never to admit that they wish they weren’t?

Then, we get this:

“Who are we to say that cystic fibrosis is such an overwhelmingly terrible disease that they shouldn’t be allowed to live?” Rudd said. “Do we say that about a one-year-old who is diagnosed? What’s different about a younger child?”

Little is different about a younger child. Everything is different about a fetus. A fetus does not have cognition. A fetus lives inside a woman’s body. A fetus has never drawn a breath. A fetus has not lived a life to miss.Those are significant differences.

Also, when did we go from talking about the relative independence of some Downs individuals to the horrible suffering inflicted by cystic fibrosis? Read this description and see if you think it’s an apt comparison:

Cystic fibrosis is a disease passed down through families that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder. Lung disease eventually worsens to the point where the person is disabled. Today, the average life span for people with CF who live to adulthood is approximately 37 years, a dramatic increase over the last three decades. Death is usually caused by lung complications.

Would you utter a sentence like this?: I hate the thought that there will be fewer people with cystic fibrosis in the world as a result of advances in prenatal testing. Would you tell parents how “rewarding” it is to raise a child with cystic fibrosis? Who are we to say that the disease is overwhelmingly terrible? Rudd asks. Well, here’s who we are: Caring parents. Compassionate, educated doctors. People who don’t want to inflict unnecessary suffering by bringing a not-yet-conscious fetus into the world to experience a waking nightmare and die, choking or suffocating, at half the normal life expectancy. That’s who.

There’s also the little problem that the article jumps back and forth between arguing about the intrinsic worth of life and the rewards of being a caregiver. These two competing perspectives make the argument hard to follow.

6 + 7. Erasing Motherhood

It’s a common trope of the pro-life movement that “a moment before birth” a fetus is a baby, and therefore abortion is the same as infanticide. This is not only scientifically inaccurate, it’s misogynistic. It erases the woman, her wellbeing, and her labor from the entire equation. Childbirth is momentous. It matters. It is not just a legal flagpole where personhood is arbitrarily assigned. It is the moment at which a child begins to occupy the world as an independent being.

It is also a moment made possible by the bodily work (pain, sweat, blood and tears) of a woman. If we grew children in plastic incubators with green fluid and Classical music playing gently in the background, then the “moment before birth” comparison might be apt. But it isn’t, because children live in their own bodies, and fetuses live in their mothers’. While that fetus is in its mother’s body, she does have sovereignty over the decision whether or not to bring the child into the world. That is her sacred right as a mother. It is her sacred right as a woman not to have her body violated against her will – be it by another adult, a child or a fetus. Alone, a fetus cannot be brought into the world to become a baby. Therefore, you can’t talk about a fetus as though it exists without regard for the woman upon whom its existence depends. To alienate the pregnant woman from a discussion about pregnancy is like having a conversation about the weather on an asteroid.

Zylstra concludes her article:

It’s not that the test is bad. To be able to map a child’s DNA while they’re still in the womb is fascinating. But so is the fact that many mothers believe that it would be worse to live in an imperfect body than not to live at all.

There’s a huge problem here. Cystic fibrosis is a serious disease. Downs syndrome can be serious. Genetic diseases can leave children’s independence stalled, their mobility hampered, their bodies aching, their minds wracked with torturous bouts of depression and anger, their futures uncertain and their families stressed to the breaking point. This isn’t about perfect and imperfect bodies. This is not the difference between passing on genes correlated with overweight and comparing your potential child to fitness models. The perfect/imperfect body dichotomy is a red herring. No body is perfect. It’s disingenuous and manipulative to assert that having a serious genetic disorder is equivalent to having a few pimples and a crooked nose.

If I somehow (metaphysics be damned!) had a choice to be born in a body that would slowly disintegrate on me, like that of Stephen Hawking, or not to be born at all, I’d pick the latter. This does not mean that I think Stephen Hawking shouldn’t be alive. He is a great scientist. He has done marvelous things with his life. But that does not make the pain and horror of his situation any less. If I could prevent my own child from being born into a life like that, I would. I consider it my moral imperative. And if Stephen Hawking and I were hanging out in the metaphysical waiting room before descending to earth, and he told me he didn’t want to be born into all that suffering, it would be unfathomably selfish of me to demand that he endure what he has endured just so that I (and other healthful people) could benefit from his mind.

My Points:

If you made it this far, congratulations. Here’s the rundown:

Respect disabled people for their personhood, but don’t promote the continued existence of disabilities. That doesn’t do anyone any favors.

Don’t treat disabled children as special projects to improve their parents’ character.

Don’t act like everybody can afford to live by your conscience.

Don’t prioritize the wellbeing of a fetus over the entire family.

Don’t force special needs children into families that don’t want them, and will abuse, neglect or abandon them. They have it hard enough in families that want them and have the resources to care for them.

Don’t conflate serious disorders with minor imperfections to guilt parents into a choice to raise a child they don’t want to have.

Don’t abuse statistics to lie about the satisfaction rate of parents with special needs children.

Don’t minimize the labor of mothers or pretend that you can talk about fetuses without women.

It is possible to choose abortion based on a positive screening for genetic disorders because you are morally opposed to inflicting suffering on others. It is possible that women who abort fetuses with Down syndrome or more series disorders do it not because they hate Downs people or like genocide or are Selfish Career Bitches(TM), but because they honestly believe it’s what’s best for their families. The anti-abortion crowd is not the only one with a flagpole stuck in the moral high ground.

Now, finally, a thought experiment.

Why is it a “blessing” and a “rewarding” experience to raise a child with Down syndrome, but not one with Fetal Alcohol Syndrome? If there’s something inherently valuable about disabilities themselves that improves the lives of people who have them and whose loved ones have them, why does the origin of the disability make such a difference? Why is taking every precaution to avoid FAS, to the point of making pregnant women neurotic, a worthwhile societal goal? Why does no one hate to imagine a world in which there are no children with FAS?

I suspect the answer has something to do with control. Because if you can control an outcome (or at least think you can), people will be justified in blaming you for an adverse outcome. But if you can’t prevent suffering (or think you can’t), your reputation remains untarnished. If you see suffering in your future and evade it, those who are suffering will attack you for your selfishness and arrogance. (“How dare you have it so easy?”) But is that feeling of moral superiority actually moral superiority? I don’t think so. It sounds more like a cry of pain at the unfairness of the world – which is something we should be trying to fix, not perpetuate.

Sierra is a PhD student living in the Midwest. She was raised in a “Message of the Hour” congregation that followed the ministry of William Branham. She left the Message in 2006 and is the author of the blog The Phoenix and the Olive Branch.

There are many activists that strongly oppose permitting parents to get deaf children cochlear implants, pointing out that deaf culture is a rich and valid culture and that the perception of deafness as a ‘disability’ is dependent on assumptions about the value of hearing that may or may not be shared. As a hearing person I find this challenging, but I’m working with it.

charlottet

This is an extraordinarily thoughtful and profound article. It articulates clearly important oral and emotional distinctions. It is even more amazing because it was written by a woman who was raised in a far right Fundamentalist Christian community. Thank you, Sierra, for exploring issues that the pro-choice movement is usually afraid to talk about. Charlotte Taft, Abortion Care Network Director

ljean8080

the only good disabled,is a dead disabled.

therealistmom

your use of “a disabled” shows a dehumanization of persons with a disability more than anything I have ever heard a pro-choice person say. Ever. My daughter is not “a disabled”, she is a happy, loving young woman who happens to have Down syndrome.

Back to the article- thank you, thank you so much for articulating things that I have felt for over 16 years now. I have brought some of these points up on this very site, to be shot down by people who have condemned me for being a ‘monster’ for daring to admit that if I had known I was carrying a fetus with Down syndrome, I would have chosen not to continue the pregnancy. This is no way diminishes the love I have for the young woman who is here- I love her with everything I am, I will advocate for her to my dying breath. But had I a choice, I would have chosen for her not to face life with challenges, and I would have desired to not bring her into a situation with an unprepared and poor family.

It’s funny that it is perfectly acceptable to say, “I wish fewer people had cancer”, but when you speak of wishing fewer people had to cope with a disability like DS it makes you a monster wanting to eliminate these people from the earth. Both situations are challenging and potentially fatal. People equate the disability with the person. My daughter is not her disability. It is, however, over-reaching and for a lifetime, for her AND her family.

ljean8080

does your daughter know how you feel?

shewho

that I don’t understand what in this comment caused someone to rate it to disappear.

jennifer-starr

Does she know how her mom feels about what? That her daughter is a happy, loving young woman who happens to have Down Syndrome? That she’s more than her disability? That she wishes her daughter didn’t face so many difficulties and challenges in life? I hope she does know.

You, on the other hand, ljean, appear to be missing the forest for the trees.

ljean8080

who regrets her daughter,

give-em-hell-mary

My anti-abortion parents tried to murder me after I was born through deliberate neglect, drug overdosing, and other abuses, so I think you’re projecting.

My position on Cochlear implants is it’s the parents decision, not mine. Other points: Cochlear destroys any residual hearing & Cochlear isn’t perfect, not up to “normal” level. It’s significant head surgery done on an *infant* — if anything goes wrong it’s even more trama if the parents were pressured or coerced in any way. Since I’m not of that culture (but observed a lot of it at my brother’s wedding — it was different for me being the outsider rather than him) I’m not making judgements on what’s oppression or not.

maiac

Thanks for this discussion, which raises a great number of salient points in the complex question of how we balance the rights of disabled people to exist & be empowered with the rights of women to determine their reproductive destinies. There are things in this article with which I disagree or to which I object, but nonetheless, it shows wisdom by helping to unpack language and assumptions and leaving us with important questions to consider, rather that giving us answers (a sure sign of foolishness).

I might also add to this that we need to discuss the high degree of variation in disabilities much, much more than we do. This is relevant to the question of whether any disability is, in and of itself, necessarily good or bad. I believe that there are some disabilities that really are unquestionably bad; I also believe that there are some disabilities which may have positive value, in and of themselves, and that we may want to preserve in the world.

jennifer-starr

If that’s what you see, then you have truly missed the entire point of what she was saying.

smneumeier

I am a person with disabilities, both visible (cleft lip and palate, ectodermal dysplasia and related conditions) and invisible (autism). On the one hand, I am, and always will be, staunchly pro-choice, and a pregnant person’s bodily integrity is so important to me as to outweigh any other interests here. Still, that doesn’t mean I’m not bothered, both personally and as a member of the disability rights community, by what are essentially eugenics-based pro-choice arguments. They bother me in large part because I feel forced to choose between my identity and my beliefs and in the end to come down on a side that devalues what I am.

Personally, while I wouldn’t wish some of the things I’ve experienced as a disabled person, even aside from results of ableism, on anybody, I also feel on some level very threatened by the arguments advanced in support of selective abortions. This is because I live in a world where people think that it would be better if no one looked like, sounded like, thought like or lived like me ever again, and not because of what I’ve gone through, but because it makes them uncomfortable to see and be around someone who’s different. I’ve been called a “life sentence” to my parents, and one of these parents has said directly to my face that it was unfair for my brother to have to grow up with someone like me. In the state I currently live in, my existence is actionable in a court of law, and a judge and jury can decide that it was negligent for a doctor to allow someone like me to be born. I’m not okay with these things, or any of the beliefs about disability or “quality of life” that allow for and lay the groundwork for them, and I especially don’t like it being assumed that I do support them, or at least see the reason in them enough not to question them.

This is not inconsistent with the feelings of many in the disability rights movement. In the article, you assume that disabled people would prefer to not be disabled. This is not nearly universally the case. I and many other disabled people believe, and many of us have explained at length, about how disability is not a detachable feature from us, how we can’t even conceive of ourselves as able-bodied and/or neurotypical people, no more than you or other able-bodied and neurotypical people can imagine living as a disabled person. Being a supporter of the disability rights movement means respecting and valuing disability as a permanent and unavoidable part of our identity rather than trying to wish our identity, individual and collective, away.

Also, I think it’s disingenuous to talk about compassion for the potential disabled person in this context. First of all, the end result of selective abortion is that there will be no disabled person to be compassionate to. Furthermore, if one’s of a mind to attribute desires to a potential person, most people would rather exist than not exist, and so “compassion” that involves preventing their existence is at best paternalistic and based on projection by non-disabled people. Meanwhile, if the potential person is not an entity worth considering at all, then compassion is a moot point, and it’s better just to recognize that the discussion is really about the wishes and interests of the (most likely) non-disabled people involved and not pretend otherwise.

I can’t in good faith say that selective abortion is morally the same as, nor leads to, “mercy killings” of disabled people by parents and caregivers, but at the same time, the logic of “compassion” that justifies both is more or less the same: that it’s better not to live at all than to live with a disability. As long as that belief is anywhere near as prevalent as it is, I know where I stand in this society, and that it’s nowhere good. The compassion I – we – need is one that drives people to understand our point of view and work with us to make a better and safer world for us, not to assume our point of view matches theirs without asking and seek to prevent us accordingly.

smneumeier

Sorry, computer malfunction – double post.

julie-watkins

As long as the current situation exists where the 1% in charge of the rules and they treat the rest of us like factory farm animals, I’m not going to judge what individual parents choose to do. The moral problem with the 1% perverting government to serve the 1% instead of the general public good is much larger. (What the 1% does for the common good, on average, is “taking care of the flock” & future profit, not “doing the right thing”.)

I think a lot of what you are hearing that is dehumanising and disparaging of disabled people is talking points sent out by the thinktanks that don’t want a grassroots pushback saying that more support is needed — for disabled assistance as well as education, housing & other social goods. I think there’s corporate welfare cheats that want to reduce the amount of tax money spent on various safety nets so they can get compliant workers and more porkbarrel, so they push the bad ideas.

I think it’s a distorted point of view that measures the worth of a person by the amount of profit they can make for the 1%. I know there’s a lot of people who contribe a great deal to society by their words, conversations and artworks, even if they aren’t “productive” by the bean-counters measures.

ljean8080

law suits.

z3ncat

Thank you SO MUCH for this well-written, thoughtful article.

I identify with the issues faced both by parents and by children – the former because were I to have children, it is almost a certainty that they would have a disability, and the latter because I have several disabilities. I’m incredibly lucky; I’m high-functioning even for someone with a high-functioning form of autism, and with medication my depression and ADHD are managable. That doesn’t change the fact that even if I were perfectly ‘normal’ I don’t think I could stand to raise a child who presented even a fraction of the difficulties I presented to my parents, let alone to do so while dealing with my own challenges. It’s one of my strongest justifications (which I shouldn’t need) for while I’m childfree. And it doesn’t change the fact that things my friends take for granted, like getting a job and holding it for a year (barring completely external circumstances), or living away from my parents for over a year without a massive mental meltdown, are cause for MASSIVE celebration in my family.

As for the cost of years of therapy, testing for diagnoses that allow me to apply to programs to aid those with disabilities, medications that keep me functional, and enrollment in an independant school for high school (given the issues I faced in public school, I never would have graduated, let alone go to college)… well, my partner, whose depression is far less severe than mine, and who doesn’t have ADHD, and whose parents couldn’t afford anything more than medication for his worst depressive episodes, presents a glimpse into how bad my life would have been if my parents couldn’t have afforded it all.

Most of all, I identify most of all with this: ‘I get that who we are is shaped by experience and that many disabled people consider disability to be integral to their personalities – just as I see poverty as a formative experience for me – but I doubt they would have chosen to be disabled in the first place. Would they have voluntarily given up able bodies for the wisdom earned from being disabled? Would they refuse treatment, if it were available?‘ Yes, I bring a different way of looking at things and thinking about situations to the table, which I almost certainly wouldn’t have had I been born neurotypical. And yes, my experiences as someone with disabilities are an essential part of my identity. But I’d be lying if I said that given a choice, I’d choose to spend the entirety of my childhood being the victim of constant bullying that I was blamed for because I didn’t make enough of an effort to get along with the other kids, certain that I was literally an alien being because of how little sense every other human being made to me. I’d certainly be lying if I said that I’d refuse the medications that keep me from wanting to kill myself or that make it possible for me to keep a job.

smneumeier

“Eliminate these people from the earth?” Seriously? I was about to talk about how some disabled people (myself included) are okay with, and even prefer, identity-first language, but then I saw this and… well. What can I say? At least you’re not beating around the bush? I’d really rather not be eliminated, thank you very much. Being disabled is not inherently fatal, at least with many if not most disabilities. Being around people who think you are, and treat you like, a problem to be fixed or prevented can be. Please ask yourself, if you were in your daughter’s position, how safe and happy you would feel if you knew that your own parent conceptualized your identity and the issues surrounding it in this way.

jodi-jacobson

You completely misrepresented what she said and then attacked her for your own interpretation.

Please re-read her comment…

smneumeier

I agree that we need social supports in place. However, I don’t think that the value of our lives depends or should depend on their availability. Furthermore, I have no problem judging, or at least questioning, the values and decisions of parents. Parents of people with disabilities are supposed to be, and frequently think and talk of themselves as, our allies. If they aren’t living up to that name, if even they see us as being preventable tragedies who are only acceptable to some degree because we’re already here rather than because we are full and equal lives, what chance do we have of getting widespread acceptance, and, for that matter, with it, the supports we need from society at large?

progo35

smneumeier, thank you for putting the authentic disability rights critique “out there.”I, like you, do not want to be cured, I am happy as I am, and I embrace the disability rights contention that selective abortion is not especially moral or compassionate. This not only presents such abortions as “special” and distint from “less valid” reasons for abortion, it strips actual disabled people of our identity by presenting disability as an individual burden that is not subject to social influence. We can only hope that the day will come when such eugenic, ableist arguments will no longer be considered ethical in any community, no matter its perspective on abortion.

give-em-hell-mary

What I meant to point out is that I have both experienced and observed many anti-choicers disdainfully blame, shame and neglect disabled relatives, neighbors and strangers. Anti-choicers put out the false meme that only they respect and care for the disabled.

thalwen

She wasn’t saying that she supported eliminating anyone, but was talking about how some in the disability community will attack anyone proposing treatment or prenatal testing for disorders as wanting to eliminate people. The article addressed that point directly. You can be an ardent supporter of disability rights and still support making disabilities more rare. That doesn’t involve eliminating a single person. What kind of message does it send to a child that their parent wants them to suffer? No, the disabled person isn’t a problem, but the very real symptoms they have are. If a child has a fever, you reduce the fever, you don’t deny them treatment so they can “be who they are.” If a child has cancer you don’t deny them chemo because you don’t want them to feel like they are a problem. Doing whatever you can so your child has the best chance at life as possible is good parenting, making your child suffer because you want to prove a political point isn’t.

give-em-hell-mary

I have experienced many of the same medical and social problems you have and used to fret that fetal anomaly-based abortions would lead to more intolerance for the already born disabled, but not only was I extremely ignorant of the medical, social and financial toll on mothers, I also noticed over time that most abuse of the disabled was coming from so-called “pro-lifers” who often believed “sexual sins or laziness” caused the dreaded disabilities. I now would rather be aborted than suffer what my hateful family put me through. Some disabilities are far more fixable, especially if families are committed to fixing the stricken member. I envied such disabled people who turned their calamities into Cinderella stories. A former client told me of a neighbor, born like yourself with a cleft lip, who turned herself into a glamorous model with a husband by her late twenties. You’ve probably heard of gorgeous news anchor/disability activist Bree Walker, who passed on her hands and feet ectrodactyly syndrome to her children. Since she is so stunning and came from generations of people dealing well with ectrodactyly, her decision to risk passing on the syndrome seems like an acceptable trade-off to me. Old maid artist me would rather sacrifice my hands to have her face and three husbands! But many disabilities don’t have enough trade-offs, and too many religious “pro-lifers” refuse to allow adequate government safety nets for the disabled. And always, what should matter most are the welfare and wishes of the mothers.

smneumeier

I agree. People need money and supports, but devaluing disabled people’s lives in the eyes of the law is no solution at all.

smneumeier

Wouldn’t you rather have a third option, though? Why should our choice have to be between abuse and neglect, within our families or in society at large, and nonexistence? It’s absurd, for us to have to essentially take on the cruelty or at least recklessness of the rest of the world as our problem, let alone something that is best solved by us not existing at all. We don’t have to be beautiful, we don’t have to seem normal, we don’t have to be “fixed,” or even “fixable,” to be worthy of life and respect. I’d rather aim for a world where we get that then one where there won’t be any more people like me.

crowepps

I think some activists’ insistence on perpetuating the ‘culture of the deaf’ is a good example of how ‘disability rights’ might take a wrong turn. Insisting that parents should be prevented from providing a ‘cure’ for a disability in an infant/toddler because their desire is to provide their child with as close to a full range of senses as possible *might* be insulting to some adults with disabilities they don’t even know isn’t about the best interests of the child, but instead the need of someone else to have that child to be more disabled than necessary in order to use them in making a political case.

In fact, doing so reminds me irresistibly of the various fringe religions who are permitted to deliberately stunt their children’s knowledge and education in order to make it impossible for them to escape the ‘cult’.

shewho

For myself, I can’t even decide if I need a living will to dictate my medical plan, in case of emergency. How would I possibly make a determination that, had I been born with X or Z type of challenge, it would have been better not to be born? I just don’t have the data. Or, similarly, how would I say that any woman should, or should not, abort due to medical results?

That’s why I’m pro-choice. I believe each woman has to make the decisions that work for her. I’d like to see substantially more support to families, of all types. I’d like to see more of the pressure taken off women as parents. But I can’t decide for anyone else, and for sure I don’t want the government to.

smneumeier

I’m sorry, I did in fact misread her comment. However, I will not back down on the point that a disabled life is not inherently one of suffering. The analogy to chemotherapy is very flawed. Selective abortion does not preserve lives. It leads to no life at all. The implication of this is clear – a life with a disability is one not worth living. That is not a justified position, as any number of us who actually live it will tell you, and is too often based on the assumptions of nondisabled people made without actually talking to or really thinking about disabled people at all.

crowepps

Wrongful Life lawsuits, generally speaking, are an attempt to find a financial source for the huge expenses necessary to provide severely disabled children with a minimum standard of life after their parents’ insurance has reached its’ lifetime limit and the parents themselves are bankrupted. Unfortunately, because our society is only willing to provide the cheapest possible ‘warehouse’ in nursing homes, it may be the only way parents can try to provide for their child.

smneumeier

I’m sorry, you’re correct about that. I still disagree with her overall point, but my reading of the comment was off.

crowepps

It’s absurd, for us to have to essentially take on the cruelty or at least recklessness of the rest of the world as our problem

Why should the disabled alone be exempt, when everybody *else* has to cope with the cruelty/recklessness of the rest of the world? While certainly it is a ideal that people pretend they uphold and one that I would be glad to see met, it hasn’t been my experience that the world feels *anyone* is entitled to life and respect. Both always seem to be weighed in view of whether one is ‘useful’ to society.

ljean8080

based on how you affect society?Hitler had the same idea.my cerebral palsey affects me,no one else.

julie-watkins

Social supports would be a given, so the value of lives would not depend on availability of social services. So I agree with you to that extent — in a perfect world.

In a perfect world, people wouldn’t die from lack of health care — it happens all the time. Our system needs fixing.

I think I disagree with you on this nuance, however: I would not put social or legal pressure on someone already burdened to take on an additional burden.

If, pragmatically, parents of people with disabilities, have a harder time than parents in general because government doesn’t give the support it should and you don’t like the attitutes of some parents of people with disabilities — I think you’re complaining about a symptom, not a root cause, and I think you’re being unfair.

The 1% has a vested interest in pushing the idea that parents ought to do this & that, that women ought to do this and that. If it’s all about individual responsibility then the government is off the hook. It’s more free to act on behalf of the 1% and treat the rest of us as property. In the case of parents and children, this ownership expresses itself by the state pushing off most of the cost of raising the next generation of workers onto the parents, with the amount of support balanced not on the idea of “the public good” but rather “what makes the flock productive”. So there are the cases of working poor parents jailed and punished for “not being good parents”, when the parent “failed” because s/he had a minimum wage job and no support. The current state also has a vested interest in keeping support for disabled people as minimal as possible, because such support rarely produces a profit for the 1%.

Sometimes treating the symptom (“false allies” seeing disabled people as “preventable tragidies who are only acceptable because [they]’re already here rather than because [they] are full adn equal lives”) rather than the root cause (a government that’s for the rich, not for all the people) is what you do because that’s all you can do; sometimes focusing on the symptoms rather than the root cause is a distraction. The only reason why the 1% keeps it’s stranglehold on power is because it’s so good at the tactic of divide and conquer.

progo35

It really is unfortunate that the editors of RH reality check see fit to propogate ableism and misinformation in order to defend abortion. FYI: People with disabilities are not pawns to be used in defending abortion, which is what this article does.

thalwen

I never said a disabled life is one of suffering. I said that it is not irresponsible to want to prevent your child from having a disability or to minimise the negative effects of a disability. You compare a woman making an individual choice based on her individual circumstances to the eugenics movement. Again, there is nothing in this argument that argues that actual, living, disabled people should not be respected, just like actual, living women should be respected. Disabled people do not come out of some magical vortex, they are borne by a woman, and often raised by a woman, so it is not unreasonable for a woman to have some input as to what her life and body will be put through just like it is with every other pregnancy. And yes, it is not exactly like chemotherapy but not dissimilar. You can have respect and value people who have cancer while at the same time wanting there to be no more cancer and wishing your family members do not get cancer, the same is true with the myriad of disabilities.

thalwen

They are also one of the only ways that women can get effective recourse against doctors that intentionally lie to them. There have been cases where anti-choice doctors intentionally lied to women about potentially fatal defects in the fetus, the pregnancy went to term, the child died a horrible death and the lawsuits ensured that the doctor was help accountable to the woman and her family and the child whose suffering and quality of life wasn’t as important as preventing choice.

therealistmom

What they are defending is the right of a woman to choose based on her own personal circumstances. Nothing more, and nothing less. If someone chooses not to continue a pregnancy because they are not equipped to handle the care for a person with a disability, or they see it as compassionate to halt the pregnancy before the fetus has awareness because of a severe disability that will have a serious impact on quality of life (and YES, I do say quality of life. Perpetual pain or other significant problems DO affect quality of life. Most people would not “choose” to live in pain.) then they should have that right. If they want to continue the pregnancy, and get assistance from the community at large, they also have that right, and by Dog we need to be making sure that assistance exists. The point was that people need to be allowed to make their own choice in such a circumstance, without being judged for it. Period.

amadi

Sub in the name of any other marginalized community that asks only for equality and freedom from prejudice where you put “the disabled” in that thought and see if you can’t recognize how preposterous (and offensive) it was.

prochoiceferret

Sub in the name of any other marginalized community that asks only for equality and freedom from prejudice where you put “the disabled” in that thought and see if you can’t recognize how preposterous (and offensive) it was.

Nope, all I see is someone who recognizes that prejudice is bad, but people (disabled or otherwise) still have to deal with it in the real world. I think the thing that you are recognizing as preposterously offensive is reality. (And it is!)

progo35

“What they are defending is the right of a woman to choose based on her own personal circumstances. Nothing more, and nothing less.” If that’s true, RealistMom, I eagerly await their next article, “Bi-racial babies, racism, and the case for moral, compassionate abortion.” Or, “LGBT teen suicide, the gay gene, and the case for moral, compassionate abortion.” The writer and editors have targeted disability because they know that our society harbors antipathy toward disabled people and tends to seperate us from other minorities. If they targeted any other kind of selective abortion as “compassionate,” they’d be run out of town on a rail, and they know it. Moreover, defending the rights of women to make choices regarding pregnancy does NOT need to involve ANY mention of ANY particular fetal characteristic. Either a woman has the right to terminate a pregnancy or she doesn’t. RH should feature articles about that instead of using disabled people to make a point.

give-em-hell-mary

As someone who became disabled after birth by an abusive anti-choice family, I can tell you that you missed the point. Since all pregnancies are dangerous to mothers’ health and very costly in the U.S., most women want choices in whether they risk themselves and their existing families over adding such catastrophically disabled members who might never leave the hospital. Abortion based on fetal anomalies doesn’t have to threaten the already disabled: divorced pro-choice Del. Eleanor Holmes Norton has two children, one with Down syndrome. If she had additional disabled children, she would have considerably less time and money for her Down syndrome daughter, not to mention for her civil rights career that has benefitted all of us disabled and abled.

progo35

“There have been cases where anti-choice doctors intentionally lied to women about potentially fatal defects in the fetus, the pregnancy went to term, the child died a horrible death and the lawsuits ensured that the doctor was help accountable to the woman and her family and the child whose suffering and quality of life wasn’t as important as preventing choice.”

Please cite an example of this happening.

jennifer-starr

There have been attempts to pass laws protecting medical personnel who intentionally lie or omit information from an ultrasound because they’re afraid that the person might get an abortion–that much I do know. So it wouldn’t surprise me if there were cases of this happening.

person-0

….that you find being biracial and gay to be comparable to being chromosomally defective?

crowepps

My point was everybody’s equally ‘special’, which means nobody is. ‘Society’ seems to assign value to people for all the wrong reasons, and is no more cruel to the congenitally disabled than it is to those disabled by a severe injury or stroke or to those who have to deal with mental illness or with chronic diseases or with age. ‘Society’ never seems to be interested in anything but ‘what can you do for me?’

progo35

“….that you find being biracial and gay to be comparable to being chromosomally defective?”

That I see disability as being a difference that is socially influenced and thereby comparable to these states of being. What does the fact that you don’t grasp that say about you?

give-em-hell-mary

Excellent points!♥

give-em-hell-mary

You are conflating what anti-abortion Hitler did to the already born disabled with women who are reluctant to risk their own health, lives and existing family for brainless fetuses whose deadly disorders may make their potential lives unlivable hell. It’s a Sophie’s choice that women dread.

person-0

Sorry, but having a genetic defect is in no way related to either skin color or sexual orientation. A chromosomal accident is not socially influenced, whatever that even means.

thalwen

Right, so living in constant, excruciating pain is a difference and caused by society. Having a disorder that will cause your body and mind to degenerate until you die is a difference, just like skin colour. Having significant cognitive impairments that limit your ability to participate in society is just like being gay. Disability is not “just a difference” if that’s what you think then you have a very limited view of what disability is.

In that case a family doctor negligently didn’t test the child for Tay-Sachs despite them having Jewish ancestry which is typically an indication to test for the disorder. The disorder is fatal and the death is prolonged and horrific. Anti-choicers are lobbying against measures to keep such lawsuits in place, plus, like the other commenter noted, are pushing laws to allow doctors and medical personel to lie to women.

colleen

What does the fact that you don’t grasp that say about you?

That she’s not delusional.

thalwen

“I’d rather aim for a world where we get that then one where there won’t be any more people like me.”

I’m sorry, that’s just selfish. You really would want children to be born with disorders that cause them suffering so you can feel better about yourself?

Also, no one is talking about producing beautiful perfect people – that doesn’t exist. Nor does a world without disability. Obviously we cannot prevent all illness and trauma, and those people who have disabilities deserve rights and access and accomodations and are as worthy of life as anyone else. However, there is a big difference between having respect for existing living people and fetishising potential non-existent life. There is also nothing wrong with wanting your child to be healthy.

progo35

The doctor didn’t test for Tay Sachs and there is no mention of the parents asking him to do so. This is not the same as him knowing that the baby had Tay Sachs and withholding the information so that his mother would not have an abortion. Thus far, the scenario presented by supporters of wrongful birth lawsuits have not come to pass. Every wrongful birth lawsuit I’ve read about involved the doctor missing something on the ultrasound or botching a test, not deliberately withholding information to keep parents from aborting. Please provide an example of this actually happening.

julie-watkins

Cases in which doctors deliberately deceive their patients to stop them from getting abortions aren’t common, but they do happen. Abbott Brown, a lawyer who has been trying wrongful-birth cases for 34 years, says he had one case in which an anti-abortion family doctor overseeing a woman’s pregnancy never performed an ultrasound; the child was born without arms. Speaking to The Washington Post in 2009 after the murder of George Tiller, a doctor who performed late-term abortions, his colleague LeRoy Carhart described a case in which a woman learned, very late in her pregnancy, that her fetus had no brain. “Her doctor knew the problem all along but just never told her,” he said.

The above poster beat me to it but a simple google search provides plenty of examples. Anti-choice activists aren’t pushing for right-to-lie legislation for nothing. Nevertheless, even if the case is a case of negligence, that does not mean that a doctor should not be accountable to the family. In the case I mentioned, the doctor’s mere negligence resulted in a horrific situation for the family to have to watch their child suffer in pain until it died.

It is not the responsibility of the patient to know about and insist on receiving recommended standards of medical care, but the responsibility of the doctor to provide it. Whether the doctor failed to ask the questions, provide the genetic counseling and/or refer for the testing because of incompetence or because of religious faith, it was his/her failure to provide standard competent medical care that led to the patient being surprised by eventual and unnecessary suffering. Patients are *supposed* to be able to trust their doctors to provide high quality medical care, they should never find themselves being manipulated by a paternalistic insistence that ‘doctor knows best’ or in an adversarial position where the doctor inflicts his personal beliefs on them and increases their suffering because he believes it’s ‘for their soul’s good’.

autistic-and-badass

I’m pro-choice, I used to defend clinics in New Orleans, and I’m Autistic. Why does the author feel she has to defend disability-selective abortion as “moral and compassionate”, as opposed to abortion for any other reason? Is it because women who receive test results indicating the presence of a disability such as Down’s routinely receive ableist “counseling” that is basically a hard nudge toward abortion, rather than real information from someone who has Down’s, like actor Chris Burke?

ack

From a hearing person’s perspective, the resistance to cochlear implants doesn’t make sense. But we have to understand ASL as a language as well as as culture.

We just don’t get to make those kind of choices for other people.

ack

From a hearing person’s perspective, the resistance to cochlear implants doesn’t make sense. But we have to understand ASL as a language as well as as culture.

We just don’t get to make those kind of choices for other people.

give-em-hell-mary

I do wish governments and charities all provided generous safety nets and anti-bullying programs to take pressure off pregnant women facing such decisions. I encountered so much bullying growing up and into adulthood that I personally wish I had been aborted. Not all disabled people get to be beloved TV stars.

progo35

I get the impression, GEHM, that you wish you had been aborted because you were abused. This has nothing to do with your disability in and of itself and everything to do with society’s attitude toward it. And, there are many charities and safety nets and anti-bullying programs out there. As much as I’d like? No, but they are there and are increasing in number. To say that they don’t exist is to devalue them and the disabled people who already benefit from them.

progo35

That’s hearsay from an abortion provider who has a stake in couching his services in the best possible light. I want actual proof, not speculation.

progo35

She wants the world to accept people like us rather than a world that devalues us, and that involves acceptance of the possibility of people like us being born. You, arguably, are selfish for feeling entitled to step on disabled people in order to promote some ulitarian/eugenic/dystopian world where all “suffering” is eliminated.

thalwen

Oh yeah, I’m a horrible horrible person because I oppose suffering. Yep, I do. When I see people I love and care about in pain because they were born with, or aquired some thing that causes them suffering, I want it gone. Disability does not define a person, people and humanity will continue to exist as medical technology advances and we find cures and solutions to medical problems.

I value all real, existing, living breathing people, and yes, I place less value on those that do not exist. Disability will never be eliminated but it honestly boggles my mind why people would wish a disability on another person that hasn’t done a thing to them.

thalwen

Because abortion due to fetal defects gets the woman routinely condemned for her choice as “ableist”? Because pre-natal testing is seen as the same thing as eugenics? Women are not stupid, we aren’t talked into an abortion by the big bad abortionist. We make the decision based on our circumstances and the prospect of bringing a child into the world. We are perfectly capable of understanding what Downs syndrome or any other genetic anomaly is and can make our choices accordingly even without input by the menz.

give-em-hell-mary

My family’s abuse caused my disability, and there were zero anti-bullying programs throughout my school years and most of my working adult life. Much of the bullying came from my parents, siblings, relatives, neighbors, clergy, teachers, nurses, doctors, patients, store clerks, minorities like the insulting playboy Clarence Thomas when he denied me equal pay based on my ruined looks, and even homeless drunks. The very people whose jobs meant they were supposed to help me treated me like a leper. The only thing that keeps me going is my mission to expose the brutality of the so-called “pro-life” churches and politicians.

everquestioning

My (now adult) son got his first cochlear implant when he was a teenager. It has been of great benefit to him, and he hears quite well with it. The cochlear implant technology is continually improving.

My son told me that he thinks that cochlear implants should be given only to people/children who are mature enough to make an informed decision on their own behalf. I argued with him about it, pointing out that when a very young child is completely deaf (my son was able to hear for the first few years of his life), that their language skills may develop better if they get the implant as early as possible. My son said that the pain of the recovery period from the surgery is uncomfortable enough that it should not be given to a young child. I argued that a very young child likely has less pain from the procedure, and will heal quickly. As we were both debating from our own points of view, and not from scientific data, our opinions have little value.

In my opinion, the existence of “deaf culture” is an insufficient reason to deprive someone who wants one, of the benefits of a cochlear implant.

ljean8080

the Nazis diid some abortions by force

jennifer-starr

No Hitler was anti-choice. He banned abortions for German women and forced abortions on Jewish people. Both were equally abhorrent. Anyone who claims that he was pro-choice is a liar.

advocaterights

While agree that families should have the right to abort a fetus for whatever reason they see fit, especially if the outlook for the future child would be living a life with a disability/in pain/etc, I do feel like the author’s stance on disability is very misinformed, particularly when she claims to speak on behalf of the opinion of those with disabilities, as if they’re no less complicated than being poor, and that the same kind of logic can apply to how people view their disabilities (not wanting them) as someone who is poor would view being poor. I don’t think one person can speak on behalf on all poor people, nevermind the wide range of disabilities. It’s impossible to speak on behalf of a whole type of population of people, especially one you don’t have firsthand experience being in, and even then, if you claim to speak on behalf of everyone in that group you’re in, especially one as diverse as the wide range of disabilities, you’re not going to be taken too seriously.

crowepps

Ironically, there may be some reverse discrimination when ‘deaf culture’ excludes those with implants because they’re too ‘able’

crowepps

I agree with you that nobody can accurately speak on behalf of all the individuals part of a large group, whether that group is the poor, the disabled, women, Christians, etc., however that’s also true for people arguing against their views — ‘disability advocates’ who claim that their personal views are representative of all disabled people also overreach.

ljean8080

who had a disabled child.

jennifer-starr

Which is still anti-choice–my point stands.

bj-survivor

If they targeted any other kind of selective abortion as “compassionate,” they’d be run out of town on a rail, and they know it. Moreover, defending the rights of women to make choices regarding pregnancy does NOT need to involve ANY mention of ANY particular fetal characteristic. Either a woman has the right to terminate a pregnancy or she doesn’t. [emphasis mine] RH should feature articles about that instead of using disabled people to make a point.

I could not agree more. It really is offensive to single out gross deformity, severe genetic anomaly (or severity unknown until after birth, as in Down’s Syndrome) as compassionate and eminently excusable in a way that other reasons women obtain abortions may not be. I am childfree, have had an abortion (of a likely perfectly healthy embryo) and would definitely have another should any of my husband’s sperm get past my carefully erected defenses. Because I am not poor and I am a medical professional, I will be able to do this regardless of whatever draconian, misogynistic laws forced-birthers manage to pass. I have absolutely no interest in creating children and I could care less about the plight of a mindless cluster of tissue. That’s what needs to be driven home: insensate clusters of tissue do no have special rights that no one else has to commandeer the bodies of women. Period. Full stop.

As a liberal and a socialist, I support policies that alleviate and prevent suffering, as well as help each and every actual, born person realize his or her full potential – quality public education, universal healthcare, living wage, fair pay, paid maternity and bonding leave, strong environmental protections, food support for those who need it, marriage equality, etc.

give-em-hell-mary

Actually, Hitler was sometimes more “pro-life” than RCC officials like Cardinal Faulhaber who talked Hitler into a worse, but “less sinful” solution for a group of Aryans with hereditary diseases. Hitler proposed sterilizing them so they could still work and marry. The safe sex part appalled the Cardinal who insisted they be instead interned for involuntary abstinence only. This meant they were probably executed!

Eunuchs for the kingdom of heaven: Women, sexuality, and the Catholic Church by Uta Ranke-Heinemann is the source for that nugget.

Do you object to contention that termination based on fetal gender is sexist, or is your ire directed only toward those who criticize disability-selective abortion?

give-em-hell-mary

I grew up Catholic and unforgivably abused by my family and their vicious clergy. I’ve met countless victims of Catholic abuse over the years. It’s the human rights, stupid.

Why do you hate all victims brave enough to fight back? Are us already born subhuman to your fetal idols?

thalwen

So, being female is a fetal defect now? There is a vast difference between the patriarchal attitudes that cause gender-based abortion and actual fetal problems that lead to termination. One is based on irrational prejudice, the other is based on the knowledge that if that child is born, that child will have to live with that problem. However, even if you disagree, it is still not your or mine right to choose, only the pregnant woman involved.

elburto

I’m disabled. My life is a life of suffering and pain. I’d swap it for cancer in a heartbeat, because at least there’s treatment for cancer.

You are not every PWD, stop acting as if you are.

elburto

I’m disabled. My life is a life of suffering and pain. I’d swap it for cancer in a heartbeat, because at least there’s treatment for cancer.

You are not every PWD, stop acting as if you are.

elburto

You’re not King of the Disabled, with your little friend SM as Queen.

I’d give ANYTHING to not be in constant pain, or need assistance to do anything from rolling over, to taking my meds, to eating and drinking.

My life is wasted right now. I’m an intelligent, motivated person, stuck in the same bed for the last few years. I can’t leave the room, let alone the house. I can’t shop, socialise, or resume my education.

I’d need an extraordinary amount of money to be able to finish my MSc, but as I can’t work…

We’re more likely to be murdered, raped, abused, stolen from, and to live in abject poverty. Not to mention assumed to support your bizarre anti-choice views that disability is no big deal.

Until you’ve consulted with EVERY disabled person, stop speaking for us. Oh, and stop mansplaining to women, and telling them what you think they should do.

elburto

Being disabled causes me pain, being gay does not.

Being disabled causes social isolation, being gay does not.

Being disabled prevents me from working, being gay does not.

Being disabled costs me a lot of money, being gay does not.

Being disabled means I need full time care, being gay does not.

My sexuality has only been a positive thing for me. Stop talking about things you know nothing about Progo.

elburto

I grew up with evangelicals. They allowed a correctable congenital deformity to progress unchecked, putting me where I am today, in such pain that morphine is too weak to touch it.

I don’t despise all theists, only those who try to use their beliefs as a way of controlling and judging other people, and those who cause and glorify pain and misery.

Oh, and those who dehumanise anyone who doesn’t share their beliefs, and believe that their way is the ‘One Twoo Path’ and should therefore be used as the basis of law.

wolfess

My first son died 2 days after he was born, and my second son is severely retarded. By the time he was 17 years old his father and I were so burnt-out that we looked for ways to spend less and less time with him — that was not fair to him or us. I was pregnant with him in 1977 and didn’t have the ability to find out early in the pregnancy if he would be born normal or not. I spent many years convincing myself that he was a blessing sent from God because He knew that we were strong enough to do right by him … we weren’t. If I learned one thing from my childbearing experiences it is that given what we lived through and what we now know, I would NEVER bring a child with Jon’s disabilities into the world. I love him dearly, but he has been such a trial for so many years that IF I had had the choice not to have him; the choice to abort him; the choice to HUMANELY CHOOSE not to bring this poor soul into the world I would most assuredly have made that choice!

give-em-hell-mary

“those who cause and glorify pain and misery”

Exactly! This is what their wilfully blind defenders refuse to address: that their cult-based medical malpractice and criminal neglect create millions of victims (who often don’t realize their disabilities were caused by the cruel cult policies in the first place)! My situation is similar to yours, so I really relate. Have you considered that you may gave been targetted for Munchausen by Proxy abuse? Munchausen by Proxy perps (usually mothers and/or nurses, including “Mother” Teresa) pompously demand pity and fame for themselves as “sainted caretakers” of sickly children and patients. Of course, the children and patients must remain sick for the perps to stay in the spotlight. Such “caregivers” can be guilty if they simply deliberately deny necessary treatments for their targets, but more often they actively secretly induce illness in their victims through IV tampering or direct physical abuse.

give-em-hell-mary

You are a wonderful mother who did her best and who realistically recognizes the impossibility of some limitations. Some suffering is just too much.

give-em-hell-mary

Thank you! And I suspect Progo would “reform” your sexuality but keep you stuck with your disability and expenses, just like my abusive folks.

nachomama

Goodness, the author is clearly ignorant as hell. Have you ever raised a child with downs? Didn’t think so. For you to cast judgement on them and their families is way out of line. Just like not every typical child is the same, not ever kid with downs is the same. Some do really well and so do really bad. It is a part of life, even for the typical community. For you to say our kids suffer is so absurd; you just really investigate more, and get to know these people before publising something like this to the public. I am not pro life nor pro choice. I would never believe that it is ok to kill a fetus because it is not what you wanted it to be. Karma is a bitch..There is nothing to say that your “perfect” child won’t get into an accident and be brain dead.. and be worse than my child with downs. Just saying.

progo35

People I know with Down Syndrome do not live in “constrant, excruciating pain.” Neither do people with cystic fibrosis-have you ever seen the movie “Sick,” about Bob Flanagan? It presents pain as something with both positive and negative aspects. As someone with a learning/autism spectrum disorder, I don’t live “in constrant, excruciating pain,” either. I wouldn’t even argue that my depression, which I feel is the most difficult of my disabilities, causes me “constant, excruciating pain.” Even acquaintances of mine who DO have conditions that cause chornic physical pain do not define themselves by that pain, think that the pain is inherently bad, or feel that their disabilities are not subject to social variables. If you think that biologically influenced pain is all there is to being disabled or that pain makes life unlivable, than you have a myopic view of disability.

progo35

“There is a vast difference between the patriarchal attitudes that cause gender-based abortion and actual fetal problems that lead to termination.”,

Actually, no, there is not. I’m helping out in a women’s studies course this semester, and we are analyzing the social constraints placed upon disabled people and the stereotypes associated with disability as part of a power structure related to conceptions of gender. They are very inter-related.

progo35

First of all, I don’t care about elburto’s sexuality. It’s none of my business: to each his/her own. Secondly, what you’re assuming about me isn’t true. I work as a volunteer for kids in special ed who are in foster care as an educational advocate who oversees their IEPs, etc. I have a lot of insight into/compassion for people going through this process because I am disabled and was on an IEP. I am active in the disability rights/studies community and would never suggest that Elburto or anyone else experiencing disability/some other difference that incites socially influenced oppression go without what they need to live their lives with dignity. So, please stop making assumptions about those with whom you disagree, GEHM and Elburto.

progo35

“Disability will never be eliminated but it honestly boggles my mind why people would wish a disability on another person that hasn’t done a thing to them. “

Because smneumeier, AutisticandBadass and I do not view disability as inherently bad, so while we do not “wish it” on others any more than we wish a particular sexual orientation or race upon someone, we do not feel that supporting the continued births of people like us is unkind or selfish toward those potential people. We certainly do not support the view that disability is a punishment to be wished upon those who have harmed us in one way or another. We regard disability as a personal characteristic and view related suffering as stemming primarily from social intolerance.

progo35

“You’re not King of the Disabled…”

Neither are you.

“Not to mention assumed to support your bizarre anti-choice views that disability is no big deal.”

I have given papers at major disability conferences twice. Everyone I’ve met at those conferences is pro choice. Everyone I’ve met also believes that their disability is a part of their identity, like race or gender. Hence, the view that disability is “no big deal” (As you put it) is not dependent upon one’s views on abortion.

I really do empathize with you, though, Elburto. It doesn’t sound like you’re getting the resources you need. Have you tried contacting a disability rights organization like ADAPT? They might have some suggestions for organizations and/or individuals you could contact to aid you in getting the resources you need to alleviate pain, to be mobile, etc.

wolfess

Thank you for your kind words :-), it’s always gratifying to hear from someone else that there are some situations that you don’t have to feel bad about, no matter what choice you made at the time.

ljean8080

talking to me.the church had nothing to do with my cerebral palsey.no on can give you that.my mom was a wonderful woma

jennifer-starr

If you actually had taken the time to read her comments, you would clearly see that Mary was talking about herself–not about you.

progo35

“Many of the readings in the follolwing sections locate the steriotypes we have been lead to believe about “others” within their specific historical and cultural contexts, emphasizing the fact that our assumptions about what it means to be female or male or transgender, gay or straight or queer, white, Latino, or blac k, young or old, learning disabled or able-bodied, Christian or atheist or Jewish, Hindu or Muslim have been constructed within historical conditions with cultural presuppositions.”

Hmmm…according to this book being used in a Women’s Studies course I’m taking, disability IS subject to cultural context and expectation, and our responses to it are affected by these influences. In short, disability is a form of diversity, like race, gender and religion. I guess the editor of this anthology was just too “delusional” to recognize that disability is a purely biological, negative trait. Silly her.

jennifer-starr

Progo, you do realiize that Cystic Fibrosis is actually a disease that is progressive and in the majority of cases is ultimately fatal? I lost a good friend to this when I was a teen in the 80s. A good friend of mine has a little boy with CF– and while she loves him very much and would move heaven and earth for him to get the best treatments, she would like to see him free of this disease and she was overjoyed that her second son did not have this condition. Thankfully, due to medical advances people with CF are living a lot longer than they did when I was young, but I would venture to say that most people would like to see either a long -term treatment or a cure–and a world where children and young adults don’t have to suffer with this debilitating illness.

thalwen

There are a wide variety of disabilities, some are mild, some are extremely inherently bad. It certanly isn’t a personality characteristic like gender or eye colour and certainly not a social construct. If your liver isn’t functioning properly, society did not cause that. If your body is unable to produce a vital enzyme, that is the disability, not society making you sick. I notice a lot of people with autism blame society for everything to do with their disorder, yet having known many people with the disorder I know that there are aspects of the disability that directly affect how the person is treated. No amount of social tolerance short of rewiring every person to make them autistic would solve that social deficit. Not to say there aren’t intollerant asshats in every aspect of life, but to say that disability is caused by societal intolerance is simply innaccurate.

thalwen

They are interrelated as there are aspects of discrimination in both. However, take away patriarchal attitudes toward female inferiority and the problem of gender-based abortion will disappear. Take away society’s intolerance toward the disabled, which has advanced greatly over the years, and you still have the problem of the inherent disability. No amount of acceptance can reverse organ damage or fix a cellular defect or any of the other myriad disfunctions that can come with the myriad of disabilities.

datasnake

I’ve had some experience grappling with this question myself (I have Asperger’s syndrome), and I think I’ve isolated the difference: autism-spectrum disorders are different from Down syndrome or Cystic Fibrosis is that AS includes advantages. It’s less a penalty and more a tradeoff. I didn’t have many friends in high school, but I never had to study to stay in the top 20 of my class either. I’ve never had a girlfriend, but my natural affinity for math means that as an actuary I never have to worry about making ends meet. It’s not a perfect life, but it has its perks.

progo35

I’ll concede that some disabilities, such as CF, have aspects which are negative, such as a shortened lifespan. But defining the person’s very life by those negative aspects is ableist. It denies any positive experiences people with CF may have, what they may contribute to the world, and subsumes their identities into our culture’s morbid preoccupation with suffering. It is possible to have a disability which shortens ones lifespan and still value/enjoy that life. Again, I direct you to the movie “Sick” about comedian Bob Flanagan.

jennifer-starr

I’m not denying any positive experiences, and yes, you can have this disease and enjoy life and make a contribution. But CF was not what made my friend the wonderful person she was–it’s the disease that stole her lung capacity and took her away from us. We’re talking about an illness here–a fatal one. And I’m sorry, but I don’t think it’s ableist to want to find a cure or at least some sort of way to permanently manage CF so that people don’t have to die from this. Apparently the medical community agrees with me–because when I was young kids with CF were lucky if they managed to make it into their teens and now a good portion can live into their thirties. Hopefully this trend will continue.

progo35

Your post talks about curing CF to prevent fatality. This is consistent with a disability-friendly approach to the issue of medical treatment, but this piece is about ABORTING fetuses with CF to prevent them from becoming disabled people whose lives will be defined by “suffering.” Ergo, the desire to prevent someone’s death by finding a treatment for their potentially fatal illness so that they can have a longer life is distinct from the desire to prevent someone’s existence because one defines that existence by negative physical symptoms and early fatality.

progo35

Your post talks about curing CF to prevent fatality. This is consistent with a disability-friendly approach to the issue of medical treatment, but this piece is about ABORTING fetuses with CF to prevent them from becoming disabled people whose lives will be defined by “suffering.” Ergo, the desire to prevent someone’s death by finding a treatment for their potentially fatal illness so that they can have a longer life is distinct from the desire to prevent someone’s existence because one defines that existence by negative physical symptoms and early fatality.

progo35

I have the same thing, and I appreciate your perspective, but I think you’re making ableist assumptions about the lives of people with Down Syndrome and Cystic Fibrosis. A person with Down Syndrome might tell you that his or her disability isn’t like cystic fibrosis because he or she experiences perks like increased emotional intelligence (people with DS do tend to have higher scores in this area), and he or she may not have a problem making friends. A person with Cystic Fibrosis might say that their disability isn’t like having Down Syndrome because they have average or above average intelligence and do very well at school, or that knowing that their lives could be shorter gives them an appreciation for life that they might not otherwise have. So, all disabilities involve some form of “Trade off,” and the best people to describe those trade offs are the people living with them.

Anaatina is a clothing spammer, ljean –she doesn’t actually LOVE anything–she just copies and pastes a stock response so she could post her site about women’s watches.

julie-watkins

& the only thing s/he “love[d]” was an opportunity to post a link to that store.

But for your point,

an article implying the disabled are better off dead

The only way to come to that conclusion, IMO, is if you believe the only criteria to consider is “the future good of the fetus”. It is legitimate for the woman to have other criteria concerning her own goals, worries, and responsibilities. From the summary points:

3. Don’t act like everybody can afford to live by your conscience.

4. Don’t prioritize the wellbeing of a fetus over the entire family.

8. Don’t minimize the labor of mothers or pretend that you can talk about fetuses without women.

These points, I believe, are NOT based on a criteria of “a born person with this defect would have been better not to have been born”. They relate to the woman and her cricumstances.

julie-watkins

oops, dup, delete

cfpatient

In your comparison of Cystic Fibrosis with Fetal Alcohol Syndrome, you ask if it is unjustified that women do things to prevent FAS.

However, prevention of CF is not what you’re advocating here. Unlike the prevention of FAS, the prevention of CF you advocate is to terminate a pregnancy. If I was aborted, it’s not like I would have been born perfectly healthy. I just would not have been born. There is a huge difference here between improving the quality of someone’s life vs. terminating their chances at life entirely.

You have stated that you would rather not be born than have a serious medical condition. But please understand that your preferences do not hold for everyone who has a disability, including those who have Cystic Fibrosis. I do not think that parents who choose to abort CF children are horrible people, but please don’t imply that this is the choice any rational would-be CF patient would make. It is not in my case, and it is not in many many others, either.

My life is not a waking nightmare. It is difficult. Many peoples’ lives are difficult. It does not mean those lives should not be lived. And while CF has made me who I am, would I accept a cure for it? In a heartbeat.

Abortion is not a cure. Please do not confuse the two.

julie-watkins

As I posed on the follow-up to this article, I think the author of this article could have stated her position better if she had put more or the most stress on the failure of government and society to support mothers and children. I don’t know enough about FAS to know if there are cases when FAS happens when the woman doesn’t know (and didn’t have reason to know) that she was pregnant, so I don’t know if you have an arguable point.

My point of view is more focused on the pregnant woman. ONE of the factors she will take into consideration in her decision will be that some CF children would have rather not been born and others, such as you, do not wish not to have been born.

The more important question, at the time the woman is making the decision, is if the woman whose fetus is diagnosed with CF wants to give birth to and raise a CF child. I believe this concept is implied in the above article, but the article would have been better if this concept and the concept of government/community was more stressed.

Especially in the current environment of the shattered safety net, she may not feel she has the financial and emotional resources or the skill needed to raise a child who can accept the realities of living with the disability. I also believe there is variation in the severity of CF: the pregnant woman may not want to risk that the CF will be more severe than she feels she can deal with.

jennifer-starr

I could be wrong, but I think that Mahmona is a link spammer. She just copied and pasted the first paragraph of an online article about FAS and then posted a link to a site that doesn’t even appear to have anything useful on it, apart from an offer to join some sort of mailing list.

bundleofcells

Quote: “While that fetus is in its mother’s body, she does have sovereignty over the decision whether or not to bring the child into the world.

So much I could say about the whole article, but from this sentence alone:

The mother is in the world. The baby is in the mother. Therefore, the baby is already in the world while she is in the mother. The mother who chooses abortion does not choose “not to bring the child into the world.” She chooses not to allow the child to continue living. Regardless of your beliefs, I see no way to logically refute this point. Anyone?

colleen

Abortion is not a cure.

But abortion is an excellent cure for an unwanted pregnancy. Lots of women don’t wish to gestate or raise children with severe disabilities. Lots of women don’t want to have children at all.

You really have no right at all to pretend that we think the abortion is a ‘cure’, it’s obnoxious, contemptuous and really very unattractive of you to do so. I would have far more respect if you were trying to convince others to become organ donors rather than trying to insult women into gestating children they do not want and cannot afford to properly care for.

freetobe

I would have to consider a quadrapolegic person or persons that I have seen as less disabled than i who suffers from mild bi-polar and clinical depression since I was a teen. I have seen these so called disabled people do more than me in a few short weeks. They are truly amazing. Not saying all people can do this. it depends on money situation and mental health and strong supportive family.

I hate it when people make fun of the disabled and many people do behind their backs!

I know this is off topic but the world is not a friendly place for the disabled or the depressed which I consider a disiblility.

goatini

A fetus is not a baby.

crowepps

The fact that human reproduction was designed so poorly that the majority of conceptions don’t survive isn’t anybody’s ‘fault’, and the fact that the fetus can’t survive once its placenta is evicted from the uterus isn’t the woman’s responsibility. If she doesn’t want to be pregnant, she has no obligation to continue being pregnant, because she is the one who pays the entire mental and physical price for remaining so.

Using the emotionally loaded term ‘baby’ doesn’t change the fact that the vast majority of abortions are done at the point where the fetus is less than an inch long, only vaguely humanoid and there is still a 15-20% chance it will be naturally miscarried. Using the emotionally loaded term ‘mother’ is ridiculous, as is insisting that women have an obligation to drag through another six or seven months of carrying the metabolic load of constructing an unwanted fetus because other people have unrealistic, sentimental notions about *motherhood* or religions insist *women should want to sacrifice for others* or the adoption industry argues *there are infertile couples who would take the child*.

Some women don’t want to be mothers and have no obligation to do so, most women aren’t self-abnegating and focus on fulfilling their own needs because they’re aware no one else is likely to do so, and no woman is obliged to permanently damage her health or risk her life to produce children for strangers. Pretending ‘that’s what women are for’ doesn’t reduce women to reproductive cattle for society.

Weird how some people demand that women’s *highest calling* is the entirely animalistic one of sex/reproduction, something any mammal can accomplish automatically, and ignore the fact that women also have minds.